Annual spina bifida clinic

When I checked into the clinic one of the nurses said, "wow your a mom starts off her day with roller-skates on."

Today I can report back on my gratitude of all the many people that have helped lift us along during this difficult journey. I am grateful for the ministering angels/friends & family that show up and fly in to help, that brought us food when we didn't think we needed it, that showed up at the door early in the morning to help take Hanna to the bus stop, that placed thoughtful calls & unseen family prayers and the many medical professionals that all express care and genuine concern for his health, I know I couldn't do it alone.

I will say clinic surprised me today. It was a one-of-a-kind day. Hayden received a new diagnosis Hydronephrosis of the kidneys. This means that we now get to catheterize Hayden every four hours to alleviate the pressure in his kidneys and bladder. One more thing to add to our new normal.

While Hayden's main diagnosis is Spina Bifida, that is a general term that encompasses many diagnoses of the brain, of the spine, of the legs, of the hips, bladder and bowel, and much of his coordination and muscle tone.

Let me begin by recapping the day. The day started off early having everyone ready and leaving the house at 6:30 AM. This morning Hayden met with a registered dietitian/nutritionist, a urologist, neurosurgery, physical therapist, occupational therapist, orthopedic surgery, social worker, orthotics & University of Texas genomics. It was a thorough and exhausting day.

New prescriptions from urology, gastroenterology and neurosurgery with many follow-ups and several blood tests to follow. The real surprise came at the end of the day. Neurosurgery said the fast acquisition brain scan and MRI was not conclusive as it was unreadable with a few missing images of the lower neck portion of the shunt.

Orthopedic surgery said the x-ray of the spine and hips was inconclusive as the image and angle of the hips was not sufficient to make a determination. They also are waiting until he has tethered cord surgery to compare any imaging.

The physical therapist, occupational therapist, as well as the registered dietitian all are waiting to see the results of the tethered cord surgery and the interplay with Hayden's small and gross motor abilities.

The gastroenterologist thought that we should make a follow-up appointment with Hayden's general surgeon that placed the G-tube to have nitrous oxide freeze the granular tissue that has
developed around his button.

When the urologist came in he was very surprised to learn of Haydens UTIs. He was pleased to learn of his upcoming tethered cord surgery to relieve these symptoms. But ultimately was very surprised when he saw all of the water on Haydens kidneys. He had an ultrasound done in June and everything looks perfectly normal. We will follow up with the urologist three weeks after the tethered cord surgery. The real results will not be shown for 4 to 5 months as the spine can go into shock following this surgery.

So what does all this mean? We'll continue to pray and take each day at a time and do the best we can.